Tag Archive for: autistic

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Care challenges for neurodiverse people

Neurodiversity is a word used to describe the different thinking styles that affect how people communicate with the world around them. It includes dyslexia, autism, Attention deficit hyperactivity disorder (ADHD), Tourette’s Syndrome and more. Neurodivergent people encounter challenges accessing services that meet their needs. It affects a substantial proportion of the UK population. It has been estimated that 15% of the UK population could be neurodivergent.

Healthwatch England looked at the healthcare issues that neurodivergent people can face.

In 2021, the government published its five-year strategy to reduce inequalities for autistic children, young people and adults. It commits to improving the timeliness of autism diagnoses and training of health and social care staff so that they understand and meet the needs of autistic people.

This is welcome, as our evidence shows that neurodivergent people struggle to access services which meet their needs.

Long waits

We heard about long waiting times for diagnoses and support, with people passed from pillar to post in their quest to get support. The long waits can be very disruptive for children and young people.

“My son is 10. He has extreme anxiety, which prevents him from attending school and daily activities. He has previously tried to attack myself and siblings with hammers, scissors etc and has been suicidal with threats to take his life.

As he is suspected autistic, which we have been told the diagnosis is two to four years for, CAMHS declined to help as they can’t deal with autistic children apparently. GP can only refer to CAMHS. Early help sent us a woman whose only suggestion was a sticker chart.

No one is willing to help my son. We have been told our only option is to call the police when he goes into meltdown who will take him away, which would cause him and our family extreme trauma and still wouldn’t enable him to access any help.”

– Story shared with Healthwatch England

Lack of accessible support and information

We’ve also heard that neurodivergent people struggle to get the proper support or information in a suitable format to enable them to engage with health and care services.

Phone appointments, waiting areas that overload the senses, changing appointments at short notice, a lack of continuity of care and professionals who don’t take the time to reassure can cause neurodivergent people anxiety when trying to get support from services.

“Communicating my private health needs to a complete stranger is very difficult for me. I need to speak to someone who knows me. This is typical of someone who is neurodivergent but the system is set up for neurotypicals who can navigate it.

In my mind this is discrimination. I am being forced to conform to something I cannot do, process, cope with and learn to manage.

Neurodivergent people cannot learn to be neurotypical anymore than the blind can learn to see or wheelchair users manage without ramps/stairs.”

– Story shared with Healthwatch England

Lack of support after diagnosis

Healthwatch Northumberland researched issues raised by parents and carers of autistic children and young people in Northumberland. They reported parents mentioned a lack of follow-up support after receiving a diagnosis and a feeling of being left to do their own research about their or their loved one’s condition, how to manage it and support available.

“As soon as they were eventually diagnosed they were discharged and we were told it was up to us to research and learn how to support them”.

Read the full report.

How can we improve patient experience for neurodiverse people?

One answer to this is ensuring that the Accessible Information Standard is adhered to across services.

This sets out what steps health and social care services should take to ensure that people are given information about their health and care in a format they can understand.

However, our research on the Accessible Information Standard found that people who need information in a format they can understand struggle at every stage of their healthcare journey.

Freedom of Information Act requests asked NHS trusts how well they comply with the Standard. They found that only a third of those who responded said they were fully compliant.

Therefore, we have called for a review of the Accessible Information Standard. We worked with NHS England to feed in the findings and recommendations of our work into the review.

Please get in touch with your experiences of accessing and receiving care, as a neurodivergent person or as the parent or carer of someone who is neurodiverse.

Three people with learning disabilities talking to each other

Help make care better

Help make care better in Northumberland for people with learning disabilities

People with a learning disability and autistic people are more likely to experience poorer care and face inequalities, despite needing to use health services regularly. Their needs are not always met by the system, leaving people and their loved ones feeling diminished or ignored.

Have your say

We are working with Healthwatch England to hear more from autistic people and those with learning disabilities about their experiences of care. Please share your experience and help us make NHS decision-makers aware of what needs to change to improve access to care.

We’re completely independent and impartial, and anything you say is confidential.

Share your story

You can also provide feedback on care by giving us a call on: 03332 408 468

autistic children and mental health services

Mental health services and autistic children

Are NHS mental health services working for autistic children and young people?

We have been hearing from local families that some NHS mental health services aren’t working for them. To understand what is happening, we would like to hear about the experiences of as many autistic children and young people as we can. This includes children with a formal autism diagnosis, currently being assessed, or where there is an indication of autism. We want to know what is working well and what could be better.

Please tell us about your family’s experiences online, or by getting in touch in a way that suits you.

What you tell us will be included in a report to those who pay for and provide these services, along with recommendations of how services could be improved for children and young people. It will be anonymous and we will ensure you cannot be identified.

Read what Sarah, Ellie and Jennifer have to say and then tell us your story…

Parent Sarah says “For both of my children it took several years to get a diagnosis of ADHD and autism. Both have had issues with their mental health alongside their ADHD and autism. The delay in diagnosis impacted negatively on their mental health and both also experienced additional deterioration after Covid-19.

“Many different health and care services have been involved with my children, but these services are unfortunately not all joined up. Often referrals would be accepted for support but then discharged on the basis that other services were already involved or were better suited to provide support, care or treatment. When support has been received this is time-limited or specific to concerns at any one time leading to the process of needing to fight to seek help again later down the line.

“My children’s mental health difficulties have been seen as being ‘part of their autism’ rather than a separate condition that required treatment and help. This has led to difficulties and challenges getting the right support and most appropriate services involved for their mental health. Many people on the autistic spectrum have anxiety and mental health issues. This is not autism but the effect of having to adjust to the world around them and the many challenging situations they face.

“What has been most difficult is that every step of the way I have had to fight to get the right support my children need, challenging what we have previously been told and doing a lot of research ourselves. At times we felt we were not being listened to. It feels like we have had to become specialists in our own right, whilst also caring for children with additional needs that can be very challenging.”

Young person Ellie told us “The mental health professional I saw at the NHS didn’t seem to know very much about autism, so they didn’t realise that the appointments themselves were very stressful for me. I don’t think they always believed me when I said how bad I was feeling because on the surface I appeared to be okay.

“My mental distress at the time was extremely high and I was experiencing some very dark thoughts, but I didn’t feel listened to or understood. I would have liked to have had someone like my dad with me at the appointments but that wasn’t an option because they were held at school.

“My mental health has slowly improved since then but that’s because I started seeing someone privately who has experience of working with autistic people. I feel very lucky about this because I know not everyone would be able to afford it.”

Jennifer, whose child is autistic, says “The initial relief of my child being provided mental health support was quickly replaced by concern, as instead of getting better they got worse. A lack of knowledge and understanding about autistic presentation meant the therapist didn’t connect authentically with my child, who in turn felt invalidated by the whole experience.

“The number of sessions offered was limited and at the end of the programme I was shocked to find my child didn’t reach the threshold for further support. Instead, we were provided with a list of community-based support organisations and left to fend for ourselves. As a parent I now have a complete lack of confidence and trust in the NHS mental health system.”

Tell us YOUR story

Whether your child may be autistic, is currently being assessed or has a formal autism diagnosis, we’d like to hear their experiences of mental health services. We’d like to know what went well and what could have been better. Tell us your story online, or if you’d prefer to speak to one of our friendly team in confidence, please get in touch.

This piece of work has now closed.

Zoom

Online Event – National Autistic Society

Come along to our free, online public event to hear from Nellie Allsop from the National Autistic Society who will provide a brief overview of autism and the support available in Northumberland.

Nellie will share an overview of what autism is, drawing on her personal and professional experiences. She will also provide information on how autistic people and their families can access support, both locally within Northumberland and nationally.

There will also be a chance to ask questions.

Register now and we will send you a link to join closer to the event:

CNTW autism

Is CNTW NHS Trust Autistic Friendly?

Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust provides a range of mental health, learning disability and neurological care services across the north of England.

The Trust wants to know if it is an autistic friendly organisation.

A questionnaire has been developed by staff and service users with the help of autistic people.

This questionnaire let’s you to give their thoughts as to whether the Trust is an autistic friendly organisation and what you think works well or what could be better.

Anyone can complete the questionnaire.

Please leave your views by 31 December 2021.

If you would like help to complete the questionnaire, please contact the Patient and Carer Involvement Service at:
Involvement@cntw.nhs.uk.

 

Tell us your experience of any NHS or social care service you have used recently

Events

National Autistic Society

Online Event – National Autistic Society

Free, online public event to hear from Nellie Allsop from the National Autistic Society who will provide a brief overview of autism and the support available in Northumberland.

Nellie will share an overview of what autism is, drawing on her personal and professional experiences. She will also provide information on how autistic people and their families can access support, both locally within Northumberland and nationally.

There will also be a chance to ask questions.

Register now and we will send you a link to join closer to the event:

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